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About Me

I am a below knee amputee. More importantly, I am also Mommy to two boys, a very active 10 year old (Robby) and an mischievous toddler (Timmy). I have learned that being a parent with a disability can create some unusual and sometimes humorous situations.
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Friday, October 19, 2012

Robby is flourishing in school. Each day I pick him up and he proudly
shows me the new words that have been added to his vocabulary ring. I am
amazed at how much he has learned in just six weeks!

It has
taken awhile and more than a few growing pains, but we are both
acclimating to our new schedule. I still miss him while he's away, but I
have to admit that the hours between dropping him off and when I pick
him up pass quickly. It's been nice being able to work in a quiet house.
I get so much more accomplished when I'm not constantly interrupted for
a snack, a cartoon or to play Legos.

Slowly the morning "I
don't want to go to school" dramatics have faded. It took me several
weeks to realize that the treats I was making to surprise him when he
got home from school were causing much of his angst. Robby loves baking
me with me. Instead of seeing cookies and cupcakes on the counter as a
special treat, he was seeing that I was baking and having fun without
him. As soon as I promised that I do nothing fun while he is at school
and explained that all I do is work, the going to school hysterics
evaporated.

In fact, he is adjusting so well to school that I am
having trouble transitioning to the emerging "big boy" mentality.
Yesterday, when I dropped him off in his classroom, Robby pulled away
when I tried to kiss him goodbye. Instead of our usual embrace, he
pulled me into the corner and asked me to not kiss him in front of his
friends.

I'm not too proud to admit that his request left me
feeling deflated. I drove home and fought back tears as I tried to grasp
that my little boy is growing up. I realize that it is normal and
expected that he will separate from me. That being said, I don't have to
be happy about it!

Thursday, October 18, 2012

Sometimes I find it difficult to define the "amputee culture."
Losing my limb not only resulted in my using a prosthetic, but also
included membership into an amazing club. It didn't take long for me to
realize that I was now among a group of strong, supportive and slightly
persnickety survivors.

Amputees have their own lingo.
Only an amputee can casually complain that "my darn leg broke again"
without setting off alarms about impending emergency room visits.
Referring to a prosthetic fit as a "bad leg day" requires no further
explanation, and we all know the sudden onset of vulnerability that
occurs when we cannot wear our devices.

Eavesdropping on a
group of amputees, you will hear jokes about limps and limbs. To make it
clear, and to answer an often awkward question to broach, it is okay
for us to make light of the disability but not for others to do so. Only a fellow
amputee friend can refer to my gait as a "gimp" or "hobble." Hearing
those descriptions from anybody else causes me to become defensive and
angry.

The amputee culture is an odd mixture of
camaraderie and hierarchy. There is a definitive, yet often unspoken,
self-imposed caste system depending upon the level of amputation. Many
newbies are unaware of their place within the continuum until they are
summarily "put in their place" by another amputee.

I
was shocked the first time my amputation was referred to as a "paper
cut." On the disability ladder I am on one of the lowest rungs, slightly
above those missing toes and partial fingers. In terms of living with
limb loss, missing my left foot is about as easy as it gets!

Experience
has taught me never to complain about my prosthetic or amputation in
the presence of a more involved amputee. Although I have my own issues, I
recognize that I have it much easier than many of my amputee friends.
Sometimes it is easier to smile and conform than to try to buck a caste
system that seems to be so ingrained within the amputee community.

Wednesday, October 17, 2012

I am exceedingly grateful to report that my cancer scans have been read,
and I have been declared cancer free! With the memories of chemotherapy
and radiation never far away, my heart sings every time I hear the "all
clear" from my doctors. It doesn't matter how many years I've been
cancer-free, I will always be haunted by the fears of a recurrence.

I
don't talk much about my cancer experience primarily because it is a
part of my life I wish to forget. Waiting for my test results, coupled
with some distressing news about a friend, the dreaded "c" word has been
making an ominous presence in our home. As I am celebrating being
cancer free, my friend is currently losing her
battle with the same cancer that I fought.

When Vashni was
diagnosed she reached out to me and I relayed my story. I told her in
blunt terms what to expect during chemotherapy and radiation. We talked
about the side effects and even joked as many of my predictions came to
fruition. We were so similar that I expected her disease to respond as
mine did to the treatment. About three months after her diagnosis, it
became clear that she was battling a completely different beast.

My
cancer did not spread; Vashni's spread to her liver. During the past
year she endured grueling chemotherapy, painful procedures and
debilitating clinical trials in an attempt to beat those horrendous
cells. Yesterday I learned that hospice has been called and that her
parents have taken up residence in her home to be with their daughter
and her husband during this time.

The news of hospice
involvement shook me to my core. I sat in my prosthetist's office and
began to cry. My heart breaks for Vashni, her family and everybody who
loves her. When she learned of her diagnosis, I promised her that she
would be okay. She was understandably scared, but I knew in my heart
that she would beat the same disease that I beat. Now she is dying. It
wasn't supposed to be this way!

Knowing that my friend is losing
her battle with cancer, I feel oddly guilty about rejoicing in my being
declared healthy. Her struggles have reminded me that cancer does not
discriminate, and that good health can never be assumed. I owe it to
everybody who has lost the battle with cancer to remain vigilant about
my screenings.

In honor of Vashni and to celebrate my cancer-free
status, I have decided to participate in the National Race to End Women's Cancers next month. I can't think of a better way to honor this moment than to try to raise money to eradicate this horrible
disease. I will be walking/ jogging with pride, knowing that I have
beaten cancer and that I am representing Vashni, somebody with an
extraordinary strength and loving character.

Tuesday, October 16, 2012

Saturday morning, before the reunion preparations began, I took Robby to
the much anticipated Lego Robotics class. His teacher highly
recommended that Robby attending this course because he gravitates
towards the Lego table at every opportunity. Combining robots with Legos
seemed like a surefire fit for my little builder!

Since Robby
was in the youngest class, my attendance was mandatory, not that I would
have left him I had the opportunity. I love watching Robby learn and
his enthusiasm about this class was contagious. My mind began to swirl
with the possibilities at Christmas as he excitedly began to build with
the colorful little plastic blocks and bits.

At the beginning the
class, Robby was given the choice of which robot he wanted to build
first. With no hesitation he was emphatic that he build the "kicking
leg" robot first. I overheard him tell his teacher that he "was going to
be a prosthetist someday like Mr. Elliot and build Momom new legs. I
should probably get started now." At this point my head was probably as
big as the room.

Robby and his Lego teacher worked for nearly an
90 minutes constructing the kicking leg robot. Unlike when he builds at
home, Robby demonstrated an uncanny amount of patience as he actually
followed the instructions (typically they are tossed to the side and
ignored). When he became frustrated he asked for a moment to take some
calm down breathes, and then he resumed working on his project. By the
time it was complete, we were all anxious to see if it worked.

Robby
proudly hooked up his robot to the test computer. I was probably as
excited as he when his robot kicked on command. I wish we could have
kept his robot but, being that it was made of Legos which were needed
for the afternoon project, Robby's first leg was dismantled before
lunch. Of course, not before I got a picture and a video!

After
lunch Robby returned to the classroom to begin working on his second
project. As instructed, he built a spinner and a spinning machine. When
hooked up to the computer, the little Lego top took off spinning around
the table. After his project was correctly demonstrated, he was given
his final test.

The evaluator handed Robby a blank sheet of
paper and asked him to figure out a way to keep the top spinning only on
that surface. I knew that Robby needed to change the size of the gears
within the contraption, but I wasn't sure if he knew how to achieve this
goal. With an unexplained burst of confidence, Robby took the sheet of
paper and told the teacher that her test was "easy peasy" and promised
to be back within a few minutes. I was sure we were in for a few more
hours of Lego class as he worked his way through the gear issue.

As
Robby's Lego classmates began to tinker with their spinners, Robby
began to play with the extra Legos in the box. His teacher reminded him
of the task and told him that he could play after he passed the test. He
looked up and smiled and said, "I'm not playing, I'm passing my test."

It
didn't take me long to figure out what Robby was building. While all of
his classmates were struggling with the gears and motors, Robby was
happily building a Lego border around the sheet of paper. He finished
his wall in about three minutes, and called the Evaluator to view his
project.

Before he unveiled his Lego wall, he asked his
teacher, "So in order to pass this Lego class all I need to do is keep
the spinner on the paper, right?" She smiled and said yes. He proudly
took out his wall and put it on top of the paper. He turned on the
spinner and delighted in watching it bounce off of the border he
created.

The Evaluator was dumbstruck by his solution. She began
to talk about changing the gears when Robby's Lego teacher interrupted
and reminded her of the objective. Robby, without a doubt, met the goal
that he was given. She agreed that he thought outside of the box and he
passed the final test!

My little Lego engineer was so proud as
he skipped out of the room. In the car he confided, "Momom, I think I
was supposed to change the gears. But that seemed like a lot of work and
trouble because I would have to take the spinner apart. Was I cheating
by building the wall? I thought it was a good idea." I promised him
that he was not cheating because he had solved the problem. He proved
that sometimes the simplest solution is the best. I can't wait to see
what he creates next time!

Monday, October 15, 2012

After much internal debate and in spite of high anxiety, Saturday night I
conquered a looming fear. I didn't scale a mountain or jump out of a
plane, but for me the accomplishment was nearly as grand. I gathered up
all my courage and proudly walked into my 20 year high school reunion.

High
school was not an easy time for me. I wasn't considered a nerd or a
geek; those labels would have been a promotion. I was invisible.

I
was the girl who looked familiar yet nobody really knew. I never had a
date, never attended a dance, and I was not invited to parties. My Mom
never worried about me being tempted by peer pressure. I had no friends
to sway me to experiment to break rules. Needless to say, I never got
into trouble!

During my freshman year I became ill. What we
thought was a flu turned into what was conjectured to be mono. I'll
spare all of the details, but I remained sick until my Junior year. By
the time I did return in a full-time capacity, friendships and the peer
hierarchy had been established. My self-esteem had been shattered
throughout my medical ordeal, leaving me a shell of the person that I
was when I first became sick.

In retrospect it's easy to see why
I didn't belong to a peer group. Between doctor visits and hospital
stays, my priorities had become different than those of the average
teenager. I had lost the ability to relate to my classmates, and I
didn't know how to find a common ground.

Instead of trying to
fit in, I retreated. I became uncomfortably shy and reserved. I was
miserable throughout my senior year. I eagerly anticipated my graduation
day not because it was an opportunity to celebrate my accomplishments,
but because I knew that once I left, I would be liberated and free to be
myself.

Typically I have ignored the invitations to my high
school reunions. Until this year, I had no interest in seeing anybody
from that time of my life. However, this time I felt the need to find
closure. Maybe I'm finally becoming secure enough in myself to confront
the demons of my past.

Saturday night, I was shaking as I
walked into the reunion. Scott sensed my anxiety and headed straight for
the bar, providing me with a steady supply of liquid courage. I can't
say that I was comfortable during the evening, but I'm also not sure
that comfort was an achievable goal. I enjoyed reconnecting and learning
about everybody. I was reminded during the evening that in spite of
losing my leg, I have a wonderful life!

I'm glad that I went to
the reunion. Not only did I get to see some people I have wondered
about, I was able to conquer my adolescent insecurities. I realized that
everybody blossoms at a different time in life. High school is simply a
snapshot of four awkward years, and I am so much more than that shy
teenage girl with the frizzy perm. I am not the same person I was back
in 1992. I have aged well.